Impact of Social Needs and Identity Experiences on the Burden of Illness in Patients with Multiple Myeloma: A Mixed-Methods Study
Abstract
:1. Introduction
2. Materials and Methods
2.1. Study Design
2.2. Participants
2.3. Data Collection
2.4. Data Analysis
3. Results
3.1. Participant Characteristics
3.2. Survey Findings: Social Determinants Impacting Health
3.3. Focus Group Findings
3.3.1. Burden and Unique Aspects of Multiple Myeloma
“There [are] days when I have upcoming labs, or I have a pain somewhere, and then you have to wonder, is there a new lesion? Am I relapsing? You just don’t know from one day to the next.”(White patient, 50s)
“Every 3 months I have to go through that agonizing wait to see if I am still in remission, if my numbers went up or down. And it’s hard. Mentally, it’s hard.”(Black patient, 50s)
“My activities, like physical activities…changed a lot because of the fatigue, and because some things I just can’t do anymore because of the weak bones or the aching or whatever.”(Black patient, 60s)
“I present like I’m fine and people don’t see the other things that are going on behind the curtain. … I think sometimes they forget that I’m sick.”(White patient, 40s)
3.3.2. Social Needs
“It’s a complicated cancer to understand.”(White patient, 50s)
“It took quite a bit of time to understand the relationship of the numbers that you would see in your labs: what was good, bad, stable.”(White patient, 50s)
“I said, ‘Well, how am I going to pay for this?’ Because when I got multiple myeloma, I had to stop working. And the coverage I had on my job, it didn’t cover me anymore. And I was going to figure out how I was going to pay for all these doctor appointments.”(Black patient, 60s)
3.3.3. Identity Experiences
“I was accused of faking the pain in my back because they couldn’t find anything. [It was assumed] I just wanted pills. … I know my race had something to do with it.”(Black patient, 50s)
“I had been going to the doctor a long time before I was diagnosed, and a lot of that I was dismissed based on a lot of my symptoms because of my age, because I was too young.”(Hispanic patient, 40s)
“Because of my prior treatment when I had radiation and chemo … that did damage, because I’m fragile. … But that’s why [my doctor] wouldn’t let me have the [stem cell] transplants. … My age, I think that had something to do with it, too.”(White patient, 70s)
“Just being Latina, my parents, everything is, ‘Oh, you just got to push through. … Everybody gets tired.’ And I’m like, ‘No, I’m like abnormally tired. This doesn’t feel right.’”(Hispanic patient, 40s)
3.3.4. Intersectionality
“I have met a lot of people in the myeloma space, and they’re either retired or they’re so close to retire anyways that they’re in a different position financially. … The best income-earning years of my life are impacted.”(Hispanic patient, 40s)
“Our disease is very complicated and it’s difficult to understand. I think that would certainly play a huge role. … Everything now is online. … And I think for somebody that’s older and maybe not so tech-savvy, that would be certainly a huge issue.”(White patient, 40s)
4. Discussion
5. Conclusions
Supplementary Materials
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
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Survey Group n (%) | Focus Group n (%) | |
---|---|---|
Age, n (%) | ||
40–49 years | 3 (14.3) | 3 (15.0) |
50–59 years | 9 (42.9) | 9 (45.0) |
≥60 years | 9 (42.9) | 6 (10.0) |
Sex | ||
Female | 15 (71.4) | 12 (60.0) |
Male | 6 (28.6) | 8 (40.0) |
Race and ethnicity, n (%) a | ||
White | 10 (47.6) | 8 (40.0) |
Black | 7 (33.3) | 7 (35.0) |
Asian/Asian American | 1 (4.8) | 3 (15.0) |
Hispanic/Latino | 4 (19.0) | 2 (10.0) |
Education level | ||
Graduate degree | 7 (33.3) | 6 (30.0) |
Bachelor’s degree | 5 (23.8) | 5 (25.0) |
Some college | 6 (28.6) | 7 (35.0) |
High school or less | 3 (14.3) | 2 (10.0) |
Geography, n (%) b | ||
Suburban | 11 (52.4) | N/A |
Urban | 6 (28.6) | N/A |
Rural | 4 (19.0) | N/A |
Health insurance type, n (%) b | ||
Commercial | 10 (47.6) | N/A |
Medicare or Medicaid | 10 (47.6) | N/A |
Tricare | 1 (4.8) | N/A |
Social Determinants | n (%) |
---|---|
Mental Health Determinants | |
Felt at least somewhat stressed due to own health | 18 (85.7) |
Felt at least somewhat stressed due to health of friends/family | 13 (61.9) |
Feel lonely or isolated at least sometimes | 8 (38.1) |
Felt at least somewhat stressed due to family dynamic/wellbeing | 8 (38.1) |
Felt at least somewhat stressed due to financial strain | 8 (38.1) |
Felt at least somewhat stressed due to food insecurity | 6 (28.6) |
Felt at least somewhat stressed due to transportation problems | 4 (19.0) |
Little interest or pleasure in doing things at least half the days | 3 (14.3) |
Feel down, depressed, or hopeless at least half the days | 3 (14.3) |
Felt at least somewhat stressed due to housing instability | 2 (9.5) |
Determinants Related to Housing and Food | |
Worried at least sometimes in past 12 months that food would run out | 9 (42.9) |
Issues with current living situation (e.g., mold, pests) | 4 (19.0) |
Worried about losing stable housing | 2 (9.5) |
Communication Determinants | |
Need assistance at least sometimes understanding healthcare forms/information | 7 (33.3) |
Speak a language other than English at home | 3 (14.3) |
Transportation Determinants | |
Travel more than 30 min to healthcare appointments | 6 (28.6) |
Lack of transportation led to missed healthcare appointment in past 12 months | 2 (9.5) |
Determinants related to Financial Instability Filed for personal bankruptcy in part due to health Currently receiving Supplemental Security Income (SSI) or disability Had utility companies threaten to shut off services in last 12 months | 1 (4.8) 2 (9.5) 4 (19.0) |
Category | n (%) | Sub-Category | Patient Quotation a |
---|---|---|---|
How/where diagnosis is made | 15 (75.0) | Delayed diagnosis; some patients were diagnosed only when they reached an acute health crisis | “I think that with heart disease or diabetes, in terms of just the diagnostic aspect of it, it’s much more mainstream.” (White patient, 50s) |
Progression and relapse | 14 (70.0) | Frequent relapse and remission; patients often change therapies | “There really isn’t an end game. I was at the oncologist’s office getting an injection yesterday, and someone was able to ring the bell. … For multiple myeloma individuals, we never really get the chance to ring that bell because we can’t say there’s a cure at this point.” (White patient, 40s) |
Treatments and side effects | 13 (65.0) | Diverse and complex treatments; some treatments require extended hospital stays; side effects can be severe and long-lasting | “Every line of treatment is a different set of side effects. … So, you think you’re like, ‘OK, well, this line I’m doing pretty good. This particular medicine, I’m responding well, and it’s not making me super sick.’ And then 2 months later they’re like, ‘Oh, we’re going to add this in there too.’ And then that causes some other problem.” (White patient, 40s) |
Financial burden | 13 (65.0) | Substantial financial burden; in addition to medical costs, many patients can no longer work | “When I was working, none of these mattered, because I was financially stable. I had great insurance. … The issues really became significant when I retired, because the big issue for me is, when is the money going to run out? Because the medications are so expensive.” (Asian patient, 70s) |
Impact on physical and mental health | 13 (65.0) | Significant physical and mental health concerns | “Most days you can do a little something, but you can’t do what you used to do. And I have little children, 2 and 6, so it’s difficult for them to really grasp. … The long standing, the long walking, the pitching the ball, the kicking the ball: I might be able to do that for about 4 or 5 min, but then I’m exhausted.” (Black patient, 50s) |
Appointment frequency | 12 (60.0) | Frequent appointments | “I have to go to my hematologist monthly for lab work.” (White patient, 50s) |
Number of healthcare providers involved | 10 (50.0) | Need for multiple providers including primary care, oncologist or hematologist, and MM specialist | “I surrounded myself with a good team of specialists, hematologists, and oncologists.” (Black patient, 50s) |
Location of medical appointments | 10 (50.0) | Substantial travel for appointments with MM specialists; lack of transportation support | “I go to Mayo Clinic in [City] and it’s about a 5-h drive for me. I go there quarterly right now. So, I go there and the doctor decides what we’re going to do, and then I get my treatment here locally.” (White patient, 70s) |
Determinants | n (%) |
---|---|
Social Needs with Negative Impact a | |
Lack of health knowledge | 10 (50.0) |
Financial instability | 5 (25.0) |
Lack of insurance coverage | 3 (15.0) |
Lack of transportation | 3 (15.0) |
Lack of social support | 3 (15.0) |
Lack of access to doctors and services | 2 (10.0) |
Lack of housing | 1 (5.0) |
Inability to access health information | 0 (0.0) |
None of the above | 7 (35.0) |
Identity Experiences with Negative Impact b | |
Race or ethnicity | 4 (20.0) |
Age | 4 (20.0) |
Culture | 4 (20.0) |
Disability status | 3 (15.0) |
Gender | 2 (10.0) |
Religion | 1 (5.0) |
Sexual orientation | 0 (0.0) |
Language | 0 (0.0) |
None of the above | 11 (55.0) |
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Share and Cite
Neparidze, N.; Godara, A.; Lin, D.; Le, H.H.; Fixler, K.; Shea, L.; Everson, S.; Brittle, C.; Brunisholz, K.D. Impact of Social Needs and Identity Experiences on the Burden of Illness in Patients with Multiple Myeloma: A Mixed-Methods Study. Healthcare 2024, 12, 1660. https://doi.org/10.3390/healthcare12161660
Neparidze N, Godara A, Lin D, Le HH, Fixler K, Shea L, Everson S, Brittle C, Brunisholz KD. Impact of Social Needs and Identity Experiences on the Burden of Illness in Patients with Multiple Myeloma: A Mixed-Methods Study. Healthcare. 2024; 12(16):1660. https://doi.org/10.3390/healthcare12161660
Chicago/Turabian StyleNeparidze, Natalia, Amandeep Godara, Dee Lin, Hoa H. Le, Karen Fixler, Lisa Shea, Stephanie Everson, Christine Brittle, and Kimberly D. Brunisholz. 2024. "Impact of Social Needs and Identity Experiences on the Burden of Illness in Patients with Multiple Myeloma: A Mixed-Methods Study" Healthcare 12, no. 16: 1660. https://doi.org/10.3390/healthcare12161660